Hidden

I think you need to stop seeing him all the time. He needs to realise how much he needs you and he can't do that if he keeps coming round to see you. Until he realises that he needs to seek help there is not much you can do for him. It will be hard, but hopefully will be worth it in the end. It's not easy being in your situation and I feel for you.

Hidden in reply to Hidden

I'd been thinking about that, he does need to learn to cope without me picking up the pieces or him asking my advice. Stepping back is hard but it's something that I have to do. Thanks x

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Bright2018

It is very, very, difficult for people with TBI to accept that we need help because we live in a society that throws people in wheelchairs off the cliff (metaphorically speaking). If we admit we need help we put ourselves into the disability box which is not a wise thing to do when it leads to instant discrimination. No job, no money, no respect. UK society is like this now. The DWP doesn't care about anything other than short term savings.

What this means is your husband really needs you but he cannot admit it. Also you cannot talk about it with him at the moment as it is too traumatic for him. It is a very difficult time. I am lucky, but after my TBI in 1983 my family moved house, one new start was the idea. It was difficult. Luckily for me I went to a new school (Church of England school) where everyone looked out for me.

Looking back it seems they must have been prepared for me. They probably all knew I had TBI but nobody told me. Honestly, I'm not making this up. My school was Townsend school in Saint Albans. The other kids really took care of me and I had a somewhat normal school life. That means it was the best it could be. Still it was very difficult for me to accept things the way they were. I would pick silly fights over silly things like refusing to sit on the floor in assembly. I got my way and they sit on chairs now but I was being quite unreasonable at the time, in the context. Only now, 32 years later can I see this.

TBI is a lifetime challenge. If you can make it work out for your husband that would be best, in my honest opinion, as it really is long term. It is going to get better. In the decades to follow you can look back on this difficult time sharing a bottle of red wine on a ship to France enjoying a DDay remembrance cruise, for example. It is a question of luck.

So many people will be dismissive of TBI survivors and call us unreasonable of selfish. My wife calls me the most selfish person in the world sometimes, and I am. Other times she says nice things to me and makes me happy. Then I am less selfish. I know it sounds unreasonable. Brain injury is very unreasonable. TBI must be talked about and endlessly understood. TBI survivors are Loyal, Honest, Dependable people but we are also extremely dependent and unreasonably so. We do not like to admit we need help.

All I can say as a TBI survivor is we really want to do our best but it is difficult if people put us in boxes. We do not need the "help" on offer by the medical community (doctors corrupted by drug companies). We do need the help of fellow human beings who make small allowances for us in our time of need so that later on we can be there. Over the years, decades and our lifetimes things will improve. TBI will be seen as "normal" like any other disability. If Jeremy Corby is Prime Minister next week we might even get our bus services back and have RMT UNION Bus conductors with headway badges specially to look after TBI survivors on the bus. All things are possible if we believe.

In summary, please consider hanging in there as your husband needs you.

iforget

Marie I have not been in your position (I am the one with the TBI) but one thing I would say is that you have to do what is best for you right now and put self care at the top of your priority list. As the old saying goes, you cannot pour from an empty jug. You need to take care of you.

Its hard to watch someone we love struggling but sometimes letting them find their own path is the only option. I wish you well

Hidden

Thanks, I'm trying to look after me and let him get on with it but it's hard.

He broke my garage door the other day opening it to get some of his stuff.

He came to repair it today. A job we both thought would be a nightmare. But it went well.

He tells me that he spent 2.5 hrs waiting for a train to take him home last night that was then cancelled and the replacement bus left early so he missed it. It cost him £ 56 to get home in a taxi !! I said he should have rung me but he said he never thought of that.

I suppose he needs a few more situations like this to make him realise he's not the same person he was.

It's so damn tough x

sealiphone

Some people don't like to feel they're disabled, no surprise given the current hate. However for me I accepted and now fully embrace it, it took time but now I'm in that corner fired up to come out fighting for the cause.

Crashing isn't quite what I'd aim for but coming to terms does take time and can be a traumatic route.

Many people after a TBI can't cope under stress and I imagine during your period of mental health issues he would have been under great stress, perhaps that dust needs to settle, before you'd be able to live together again.

Hidden in reply to sealiphone

He is very sensitive to my changes in mood, so I'm supposed to be happy and smiley all the time.

I don't want him to crash but he's on the go from 5.30 in the morning and last night he text me at 11 pm when he'd finished the job he was doing at home.

He's working today, then got an evening meeting that won't finish till about 9, then back at work at 8 am tomorrow. He can't continue like this or he will crash unfortunately.

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sealiphone in reply to Hidden

I suppose I may have crashed, there was enough wreckage perhaps traumatic is just another post experience positive slant.

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Hidden in reply to sealiphone

It is definitely traumatic for all involved x

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ErinSAH

Hi Marie

Unfortunately the only person that can learn their limits, what they are capable of (or not, as the case may be) is the person who had the BI. We can’t learn for someone else, and we also can’t change or fix anyone else. If given the chance, someone may adapt and prosper, or they may not. But I think we should give people the chance to try, so they can determine their own limitations. If there is a crash, and a reach out for help, you could hold out your hand and be there.

But in all of this you need to look after yourself, you are the most important part of your world. You need to do what is best for you and your happiness.

You also need help in this, care and support. Maybe reach out and find the help you need in this too.

I had an SAH over 5 years ago and I am still learning my limitations. But I know I am the only person who can truly learn what they are by pushing them.

Best of luck x

Hidden

That's the hard bit. I don't know whether me being a nurse and midwife makes me worse or better. I can see things from a professional point of view as well as a personal one.

It's so hard for Everyone involved. I've got to learn to let go.

Elenor3

Hi,

I can't offer advice as everyone's situations and emotions are very unique, but I was once told that the carer must learn to prioritise their own needs, becusse if the carer goes under, there's no one left to manage and do the caring. Have you joined your local carers network? Might that be worth looking into while you're having a bit of a break? Other carers will be able to relate to your situation. Is so difficult to manage all of this that's been thrust upon you. I wish you all the best x